I just want to make it clear: Kathryn had epilepsy before epilepsy became cool. We're not seizure-disorder posers. We're the trend setters.
This is not a happy issue of Newsweek. It makes the stuff I have written about epilepsy read like a friggin' Family Circus comic.
Just a few snippets:
"Advances in drug treatments have created the popular impression that epilepsy is now an essentially manageable condition."
"There is a terrible irony here: because most people with epilepsy are not in a constant state of seizure—they are, rather, in perpetual but quiet danger—their condition can appear less serious than it truly is."
The director of my twins' preschool gave me a copy of this magazine on Friday. Apparently, she thought I was looking too well-rested.
I have, for the most part, stopped writing about epilepsy. This is for two reasons. One, every time I write about it, I feel like an asshole. Kathryn's form of the disease is mild, and as much as it has thrown her and our family for loop after loop (after loop), there are thousands of families whose lives to the very minute are governed by this bitch disorder. That said, the second reason I rarely post about it these days is that I'm fucking sick of it. Just fucking sick of it.
Kathryn takes medications four times a day. The medicines are to keep the seizures at bay. The staggered schedule is to manage the side-effects. Every morning before school, I put four pills in a little dish next to her cereal bowl. Two of those pills, my wife and I were assured, "shouldn't have too much of an effect on her school work." When Kathryn gets home and settles in to do her homework, I load her brain up with more of that shit. You know what has an effect on school work? Being eight. Being eight years old has an effect on schoolwork. It doesn't need any assistance, thank you very much, but here we are, loading up my daughter daily with milligrams of pharmaceuticals guaranteed to make adolescence just that much harder. And I don't remember it being that goddamned easy to begin with.
At dinner, we give Kathryn an anti-seizure drug that causes insomnia, but that's okay because a few hours later, we give her a different one that supposed to make her sleepy.
Just fucking sick of it.
Just fucking sick of watching her play on these spring days and wondering when the magic time is. Wondering when she'll have played so much that a nighttime seizure is certain. Just fucking sick of deciding what is worse, the eye-rolling and anger when I ask her to come in, or the look of recrimination later as she wipes the drool from her chin and slurs at me that I should not have let her play so long.
Just fucking sick of wondering if I should tell our neurologist about the latest seizures, because I know the answer will be to add another drug to our already overly-cocktailed child.
Just fucking sick of the med-induced mood swings. Just fucking sick of wondering if the cure is worse than the disease.
Just fucking sick of the medical bills. Of the hundreds of dollars in monthly co-pays alone, and of the fuckers who scream SOCIALIST! whenever healthcare reform is discussed in this country.
Just fucking sick of feeling sorry for her, for myself, for what the MILDEST FUCKING FORM OF THIS FUCKING DISEASE has wrought upon this beautiful, beautiful child.
I'm just fucking sick of it.
Note: I am not going to open up comments on this post. That is a selfish decision on my part and I recognize it as such and I apologize for it. However I invite you to continue the conversation begun here on your own, be it on a blog or with your friends or family. Just try not to say "fucking"as much as I did. I think I overdid it.
